Not Hiding Anymore: Embracing My Cystic Fibrosis Has Changed My Life

I spent the majority of my life trying to hide my disability, so celebrating Disability Pride Month is a bit ironic for me. Who knew that my journey with cystic fibrosis (CF) and my four years since my double-lung transplant would be something I’d want to revel in, let alone acknowledge? I’ve grown to embrace my disability because it’s helped make me who I am today.

Before I embraced my disability, it often felt like a liability. This part of me made me feel separate from my peers. I felt pressured to perform at a higher level because I was operating at a deficit. I didn’t give myself permission to take breaks because that meant I would have to stop. I thought stopping would cause everyone to notice that I couldn’t keep up with them and that something was wrong with me.

Shame crept in and kept me isolated. I didn’t let anyone into my secret world except a few close friends (and family, of course). It wasn’t until I began my evaluation for my transplant that I shared publicly that I have CF. The liberation I felt in talking about this part of me, which I’d left hidden behind closed doors, was immense.

In hindsight, I realize that this shame stemmed from the able-bodied culture of measuring self-worth by productivity and ability, rather than character. As I met other people in the CF and transplant community, I didn’t feel alone anymore. There were others with the same struggles, disabilities, and life approaches. I found strength in camaraderie.

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Once my disability became visible before my transplant, things shifted. I learned that showing up authentically is what’s important, and I did just that. Going grocery shopping while pulling an oxygen tank and pushing a cart is pretty badass. Running on 6 liters of oxygen while dragging my tank is insane and awesome. And riding down the hospital hallway on my IV pole is impressive, if you ask me (or my family).

Fighting stares, glares, and misunderstandings regarding my disability has made me stronger. I’ve broken through stigmas and assumptions to bring education and awareness. Most of all, others learn empathy when they recognize that even when my disability is invisible, it’s legitimate.

I’ve grown dramatically since I let the cat (CF) out of the bag. Through deep prayer, intense therapy, and amazing community, I’ve learned that CF is a part of me to embrace — not hide. It’s something I can share with others. I don’t care how they respond because I’m confident in who I am. Knowing that my identity has nothing to do with my disease has rooted me in the truth of who God created me to be.

I’m finally so proud of myself. I’ve won battles that most people will never have to fight. I’ve persevered through several near-death experiences and never given up. I’ve approached each changing season of my health with grace and learned what I could through from it. Even though I’ve been through hell, it’s made me better and not bitter.

I get to take road trips and adventures and explore the glorious outdoors even when I’m sick. I’ve earned my bachelor’s and master’s degrees while severely ill. I’m a therapist for children and also help several people in my personal life (while I’m hospitalized, too). I’ve had to work hard for all of these things to be a reality, but it makes the reward that much sweeter!

My life with a disability is so rich. It’s given me the insight that life is precious and every breath is a gift. Each day that I’m granted reminds me that my second chance at life is truly a miracle.

My disability has been an awesome way to connect with others. It gives them permission to be themselves and talk about hard things. I consider it a blessing in disguise because regardless of ability, I can connect with people through life struggles and offer credible encouragement because of what I’ve been through.

I’ve learned that the only thing that separates us is our unwillingness to connect over our shared humanity. It doesn’t matter what our abilities are (or aren’t). All that matters is that we celebrate the unique gifts that we are to the world.

For those of you who have a disability, I hope you feel seen for the incredible people you are.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.